The main reason I volunteer at a cancer center is because I want to share my story and give patients a message of hope and faith (not in the religious sense… unless they are religious). I am working on being a better listener because several patients recently confided in me that they do not feel like their doctors are “hearing” them, which makes them feel like, “their thoughts and feelings don’t matter.”
I am lucky that my doctors at least “act” like they are listening to me when I see them (I can’t say for sure though, since I can’t read their thoughts. They could be thinking “oh boy, here comes that nutcase” while they nod and smile at me). But that’s beside the point I want to make here.
After hearing their concerns, I decided to make sure I “hear” them and either give my opinion or just be there to listen. The other day two men (who do not know each other); one who has cancer for two years and another whose family member has cancer, cried in my presence. This happened within thirty minutes of each other, in different places. Both men told me they felt overwhelmed by their situation; their eyes welling up with tears as they spoke. I asked each one, “You have every right to feel overwhelmed. Have you had a good cry lately? Crying is a good way to release stress and toxins.”
Within seconds each of the men’s tears flowed down their cheeks. It wasn’t what Oprah calls the “ugly cry” but it seemed to help. I didn’t say this to them, but it was like they thought they needed permission to cry and express grief. So many men still believe they have to be strong no matter what is happening in their life, but holding in emotions is not good for anyone, especially crying.
When a loved one is diagnosed with a life threatening disease it affects the entire family. The hospital I go to is great but it doesn’t offer any emotional support services for the family/caregivers. The majority of patients I see all live at home where at least one family member cares for them. Hiring caregivers to come to the home is very expensive and not usually covered by insurance.
When I was at my “sickest,” meaning I couldn’t sit on the toilet or shower by myself; my son called a county social worker to see if there was help available. Her response was … and I quote, “The State of California is not going to babysit your mother.”
He was so angry he spoke with her supervisor who did apologize but told him there is nothing like that unless we hire a private agency. In Southern California they charge $20.00 an hour, with a three hour minimum.
We bought a handicapped toilet (which I still use because of my balance problems), and I can shower by myself now, although I wait until hubby is home (so I don’t have problems, like falling), so it worked out for us, but what if I didn’t have family to help me?
I know I drove my son and husband crazy at times (ok, a lot of the time) because of the three different opiate drugs I was taking for pain. It would have been nice for them to go to a support group for caregivers and share experiences. Two people we knew did come in a few times a week for an hour, to give my son a break so he could leave the house. My husband had to juggle caring for me, driving me to doctor appointments, and continue working full time because of the mounting medical bills and ordinary living expenses. I of course, was too sick to work, so money was always a concern.
If you know someone whose caring for a loved one who is seriously ill, how about sending over a cooked meal? You can even buy a ready made one these days at the grocery stores. How about mowing their lawn when you mow yours? Or offer to watch the patient while they go to the movies? I’m sure if you think about it, you can come up with something that would mean so much to a caregiver or the patient. Who knows, you might be “in their shoes” some day.
Be well and be kind,